Author ORCID Identifier

0009-0007-6770-3893

Date of Graduation

5-2026

Document Type

Thesis (MS)

Program Affiliation

Genetic Counseling

Degree Name

Masters of Science (MS)

Advisor/Committee Chair

Paige Roberts, MS, RD, LD

Committee Member

Megan Morand, MS, CGC

Committee Member

Meagan Choates, MS, CGC

Committee Member

Kate Richardson, MS, CGC

Committee Member

David Rodriguez-Buritica, MD, FACMG

Committee Member

Danielle Vice, MS, RD, LD, CNSC

Abstract

Introduction: Disordered eating behaviors and attitudes (DEBAs) are unhealthy practices involving food that may not meet the criteria for an eating disorder. Many patients with inborn errors of metabolism are prescribed restrictive diets as treatment. While restrictive dieting is a DEBA in the general population, it is unclear when restrictive dieting becomes a clinically concerning DEBA in this unique patient population. This study aims to investigate the conversations on this topic between providers and their metabolic patients.

Methods: This cross-sectional, descriptive study surveyed metabolic providers, including geneticists, genetic counselors, and dietitians, who have seen at least one metabolic patient in the last year. Spearman correlation, Mann-Whitney U, Fisher’s exact, and Kruskal-Wallis tests, and a mixed effects ordinal logistic regression model were utilized for quantitative analysis. Free-response questions were analyzed with thematic analysis.

Results: Overall, 69 participants were included in the study. Despite frequently observing DEBA symptoms in patients (n = 55, 82.1%), the majority stated that conversations about DEBAs only occur once every few months (n = 28, 51.8%). Most respondents reported feeling unknowledgeable about disordered eating (n = 39, 56.5%) with self-reported knowledge being significantly higher in the dietitian group (p = 0.016). The amount of disordered eating education was not significantly different between provider groups (p = 0.062). Those with education post-training were associated with higher self-reported knowledge (p = 0.004) and self-reported comfort (p = 0.027).

Conclusions: Metabolic providers lack knowledge of disordered eating and are infrequently discussing the topic with their patients even when DEBA symptoms are recognized. Dietitians self-report higher knowledge, and other metabolic providers suggest this topic falls under dietitian scope of practice, yet dietitians report lack of training on this subject matter. Disordered eating training for metabolic providers could lead to more conversations on the topic, that in turn may lead to increased rates of DEBA recognition and treatment.

Keywords

disordered eating, inborn errors of metabolism, provider education, restrictive diet

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